ELizabeth continues to do great with her new lungs!! Everyday I am thankful to our donor family, seeing her make such progress and be able to "use" this gift is amazing. I cant believe it has already been a week that we got the call. My thoughts and prayers go out to her donor family, I know they are remembering a week ago very differently that I am. But I will forever be grateful to them.
Today alot of her meds were changed to g/jtube so that she has less and less IV drips. Her blood pressure med and insulin were discontinued. Her sedation has continued to be decreased. Her ventilator settings were decreased to a point where she could "come off" the ventilator. But before that happens they give her trial periods of just being on pressure support, where she is doing all of the work of breathing but getting just a little bit of pressure from the vent. They will do this for a few hours a day giving her time to get used to doing the work of breathing on her own. She did really well for 2 hours today. They will increase the time of the trials over the next few days until they feel she is able/ready to do all the work on her own.
They plan to take the dialysis catheter out tomorrow and possibly take out the last 2 chest tubes. If we can get her lasix switched to IV, they may be able to remove the arterial line and central line she has in both her legs and then we can start working on letting her sit up for physical therapy.
It really is an amazing thing to see all her progress and how well she is doing. She is still pretty drugged up, so she doesnt interact a whole lot. But we know she is breathing better. It's so crazy to think no more pulmonary hypertension, no more pulmonary intersitital glycogenosis, and no more underdeveloped lungs. I know transplant life not going to be easy, and we will still have lots of hospital visit and most likely more hospital stays. But at least now we know she has a chance to have a somewhat normal life. She will be able to go outside, play and be a happy baby! She has never slept in her bedroom at home, that for sure will be a huge milestone for her and us. Thank You all for your support, prayers and love!
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